In a perfect world, the Doctors would have answers, not more questions. We would know everything that Parker’s genetic disorder is messing with and how to fix it. Unfortunately, we do not live in a perfect world. So…for now at least, I’m stuck with the Doctor’s saying, “Only time will tell" OR "We'll have to wait and see" OR "Parker will let us know on his time" which is usually followed by, "We have no one to compare him to" OR "He's just unique" OR "You know what he needs more than any of us Doctor's do".
I have to say, I’m pretty tired of hearing these things. I guess I get it though. Since there is no one in the world (that they know of) with Parker's exact deletion (missing genetic material) they just can't tell us what to expect. So...they aren't able to offer predictions for Parker's future, tell us what decisions are in his best interest, or know what to look for regarding his medical issues. The doctors are also hardly ever willing to make decisions about Parker as a whole person by themselves. That is why we have so many specialists involved. Each specialist gives us their opinion about what Parker's needs are and it is our job to compile all of that and then prioritize what we feel are his greatest needs and greatest concerns.
It's harder than anything I've ever had to do.
I don't feel qualified.
I don't want to make the wrong decisions.
I’m learning to realize how comforting it is that I’m not in control of this situation. It is beyond me. I can’t see the big picture and if I were in control, I’d surely mess things up. I know that but don’t remember that I know that all the time. I can’t and won’t be able to fix things and must give the control over to God. I pray that I will do this and I know other people are praying for this as well. The prayers mean the world to me! Truly.
I don’t think I can put in to words how wonderful it is to have so many people in our corner. So many people praying for us and wishing the best for us and for loving us unconditionally. Thank you! From the bottom of my heart, thank you.
I also can’t even begin to explain how ecstatic I am about all the progress Parker has made. Regretfully, I must admit that I forget to think about the positives sometimes and just get caught up with all the other stuff. But looking at how far he’s come over the past few months, it’s nothing short of miraculous.
He was born at 4 pounds, 10 ounces and is now over 12 pounds. This is remarkable especially considering he has spent half his life in a hospital, initially wasn’t even able to digest food, had to work hard to breathe, let alone eat, has gone through major surgery, and was not allowed to eat anything, I repeat, anything for almost a week. Wow!
He can breathe! And to top that off, he can breathe without supplemental oxygen. I was told they didn’t know why he wasn't able to keep his oxygen levels up on his own and therefore we were told it’s possible he may not come off oxygen…ever. Well, they were wrong. Parker has not needed supplemental oxygen since coming home from the hospital this last time. And the trach has helped him so much. He’s more comfortable now and not working nearly as hard to breathe. We take breathing for granted but it wasn’t so easy for Parker before now.
He can hear! At least he can hear more than he could before. The ear tubes have helped a lot and it’s so fun to see Parker respond to sound.
His kidney/reflux issues have not gotten worse. They repeated some tests at Children’s and found that his issues in this area are stable. They haven’t really gotten better but aren’t worse either. So we are thrilled! We are hoping these issues will correct themselves over time and he won’t need surgery.
Historically I’ve been a closed book. I don’t like to talk about my feelings, my fears, my struggles, my inadequacies. Truthfully, I’m sure I would have a hard time doing this face to face with someone still. This blog lets me open up a bit though and I think it’s freeing, necessary, and extremely therapeutic. I’m learning to ask for help more. I’m learning that I’m not in control. I’m learning to let God set the course. I’m learning but I haven’t gotten there yet. This is a journey. Please bare with me as I try to become more of an “open book” and share my emotions as they are at present no matter how raw, intense, or insane they may be.
So since I’m being open, let me share my present concerns/prayer requests with you.
Parker's vision and/or ability to see. Parker had started visually tracking and focusing prior to his major surgeries. However, after coming out of surgery and anesthesia and having terrible withdrawls from the pain meds he was on, he is no longer doing this. Parker was supposed to have another procedure this week that would've required general anesthesia but the pediatrician agreed that we needed to put this on hold until we got some answers about Parker's eye troubles. We did see an opthamologist this week and were told Parker has quite a few minor issues with his eyes but none of which should have caused the apparent sudden vision loss. It's probable that the brain is not interpreting what the eyes are seeing and there could be different reasons for that. So once again, time will tell. We see a neurologist at the end of this month and I'm hoping he can shed more light on this situation. We just hope we can make the correct decision about how to move forward without doing more damage to Parker's vision.
Parker's airway. The procedure that required general anesthesia this week was primarily to do a bronchoscopy. Essentially, this is where the Dr inserts a tiny microscope into Parker's airway to assess what is going on and how things are looking. He was so swelled at the time of surgery that the Dr couldn't really get a good look at what was going on so she needs to go back in to get a clearer picture. We hope we didn't jeopardize anything by putting this procedure on hold. We hope Parker's airway is regaining strength and that there are no underlying issues that caused his airway collapse that we don't know about. We hope that as Parker gets bigger and stronger that the trach can be removed and that he will be able to breath once again all on his own.
The other thing they were going to do while Parker was under is an ABR (hearing screen) to see more accurately how well Parker’s hearing is. If hearing aids are going to be necessary we need to get them sooner than later so hoping we can get this test done again soon and that the results will be accurate.
Parker's spine and muscle tone. We know there are issues here but we don't know how extensive. We hope the Dr's will be able to find out more and that we will know how to treat if necessary. We are doing therapy with Parker and we hope that since we're doing these things very early on that it will make a positive impact on his tone and ability to be as independent as possible later. This is another area that may need surgery so we of course are hoping that is not necessary.
Parker's oral skills and aspiration concerns. Now that Parker has a g-button and is not allowed to eat anything by mouth it is likely for him to lose the desire to take anything orally which makes trying foods later on a struggle. Luckily, Parker LOVES his pacifier so we hope this will keep his oral skills up and make it so he doesn't have an aversion to things in his mouth. We also hope that as Parker gets bigger and stronger he will no longer be such an aspiration risk and may get to try experimenting with both liquids and solids again. Taking away his ability to eat by mouth was by far and away the hardest of all for me. I just want my little guy to have the best quality of life possible and getting to try foods orally is a huge wish for me.
Well, those are my 3 O’s for the day. Thanks again for letting me ramble.